Last week Daphne started having seizures again.  They are the same infantile-spasm type seizures she was having about a year ago.

I am so depressed.  She was doing so well, and I know that the outcome of these seizures will be loss of developmental skills, loss of sensory awareness, loss of social interaction, reflux etc. - just like before.  We have already noticed a decline in her visual tracking.

We've bumped her seizure medicine up significantly, but it doesn't seem to make a difference.  Can't beleive this is happening to her again.

Jenny

Jenny,

I'm so sorry to hear Daphne is having more seizures, and can't begin to imagine the dismay you must feel.  You've all been through so much, and it seemed like things were going so well for awhile.  Well, we'll hope that it's just a temporary setback.  Hang in there . . . Daphne has shown over and over again what a fighter she is!  My thoughts and prayers are with all of you.

Big hugs,
Jill

Jenny,

I, too, am so sorry to hear about Daphne's seizures.  I know that I can't say anything that will make you feel better.  But please know that I am thinking of Daphne and your family and keeping you all in my prayers.  Please give Daphne a BIG hug for me.  

Michelle

Jenny -

I'm so sorry to hear that Daphne's seizures are back.  I wish I new the words to comfort you.  Please know that your moyamoya family is thinking about Daphne, and you, and the rest of your family.  Lots of hugs  [smiley=hug.gif] and prayers...

-Shari

Jenny,

I'm sitting here trying to find the right words to say.... I know that this is a difficult time for you, but please try to stay strong.  YOU, if anyone, can do it!  This is just another "road bump" on the path to recovery/better health.  If you don't mind sharing, what seizure medication is Daphne currently on?  I'm sure you've already tried others, but is there anything else available on the market?  I am on Dilantin, but my doctor doesn't really like it, not to mention my body is not quite absorbing it (400 mg daily but blood tests still show below normal).  Therfore, he is slowly trying to transition me  to Topomax (25 mg).  

Well, please know that you and your family are in our prayers...Stay strong....Remember, HE doesn't give us anything we can't handle.

Aloha,
SFH

Jenny,

Like others I don't know what to say other than I will keep Daphne in my prayers and if there is anything we can do, please let us know on the board or by phone if you still have my phone number.

Michell

Shan,

Thanks for asking about Daphne's medication.  She's on Vigabatrin - which is not FDA approved - it was the only med, after seven other tries, that worked with her seizures.  It worked for almost a year - through the neurosurgeries, strokes, hematoma etc... not sure why it's not working well anymore.

We talked to Teresa (Daphne's neurosurgeon's nurse) and she recommended an EEG.  It may be that Daphne needs a different seizure medicine, now.

Jenny

Aloha Jenny,

I too think an EEG would be a good idea.  I had my first one last month...  We'll continue to keep Daphne, as well as yourself, in our thoughts and prayers.  I'm not sure what your faith is..but I received this email from a friend that literally brought tears to my eyes...tears of comfort...  Hope you enjoy...

http://www.theinterviewwithgod.com/windowmovie2.html

Take care,
SFH

Hi Jenny...I found the link that Mar put up earlier thats under the post "what causes seizures"

http://home.tiscali.nl/iimrm/epilepsie/causes_of_seizures.html

I'm not even sure if that even explains further possible reason for my Cara's continuous seizures..its a lot of information ..the mention of syncope relating to fainting and Cara doesn't faint but its first I have heard of that word....so I know how you feel with Daphne...I'm continuously loss on this too and pray that we find answers too soon.    Will keep Daphne in my prayers too.

CarasMOM